What a crazy past few months for just about all of us eh..?
I have been way absent from the site, but wanted to jump on to give a few quick updates.
First is from a woman with IBD who is starting a Podcast for all of you, check out the message below:
I just wanted to e-mail you to inform you that my friend Tony and I started a Podcast on Soundcloud all about IBD. We noticed that there weren’t any podcasts available that focused completely on IBD, so we figured we would start one! Our podcast is called “The Frequent Flusher” and is available on Soundcloud. We recorded our first episode last week and plan on recording our next one this Friday. We are hoping to widen our platforms to include iTunes, Spotify, and GooglePlay..but that is currently in the works.
I was hoping you could use your platform on IHaveUC.com in order to spread the word about our podcast, since IBDers are who we are hoping to target! Our podcast’s goal is to help bring a little bit of laughter, knowledge, and joy to this terrible disease. Below is a link to our podcast. No worries if you do not want to promote it, but I figured there was no harm in asking!
Thank you for taking the time to read this e-mail and I hope you are healthy and well!
Next is an email about Allergy Testing, Very Interesting and thx Ruthanne for sharing:
Hope that flare is in your past and you continue to recover :)
Tried to post this on the FB page but I’m not sure if it has to be approved, etc.? I wondered if you or other UCers have experience with IgG tests shedding light on which foods my trigger UC symptoms. IgG tests the body’s antibody levels towards specific foods via a blood test. If your results show you react to a food, the next step is to eliminate it from your diet to see if symptoms subside.
I was diagnose with mild/moderate Proctitis about 8/9 years ago. I almost always have symptoms, but never the cramping pain that most UCer’s experience. If my symptoms get worse, I use mesalamine enemas for a few weeks and then I’ll be symptom free for maybe 3 weeks. But that mucus and blood always creep back in.
I’ve tried a lot of natural efforts recently without a lot of luck. Then I heard of the IgG food sensitive test and thought, “What the hell, I might as well try it.” I recently got my results back and interestingly I was highly reactive to egg whites and had a mild reaction to about 25 other foods. I’ve ALWAYS eaten eggs-even when on a chicken soup diet for 3 weeks. They are my staple and I love them :( This is my second day of no eggs and (fingers crossed) I think my bad eczema looks better… we’ll see if it continues.
I apologize for the length of this! Thanks so much for your help :)
(**ON a side note here, there are all sorts of theories / conspiracy theories, etc… on food allergy testing and the different types of tests performed….much the same as there are for medications and other treatments of UC and other conditions/diseases… I would definitely recommend anybody who is interested in this to do some research on PubMed if you have a spare moment, and most importantly, if you do move forward with a food allergy test and learn something new and make diet changes and have good short AND longterm results….WAY TO GO!!! you would not be the first or the last:))
More than anything, Do What You Can to Keep Your Head UP
This whole Corona Virus time is quite new and for some its getting to be quite old. What is for sure is that for the UC’ers of the world, getting sick and needing to see a doctor right now is definitely a bit more scary than just a few months ago. I hope each of you are doing your best to stay safe, the same for your family and friends, and give the old hands a wash or two if you are in unknown spots or out and about.
I’ve been semi-stranded down in Australia now with return flights being cancelled about two months ago, so the two month trip is fast approaching 4 months, but luckily UC has seemed to have gone into hiding and not acting up. Just 4 months ago I was in a really bad way and had to go on budesonide steroids as I previously wrote about, and that did a great job of putting the flare to sleep.
One tip I wanted to throw out to everyone is with regard to something I have been doing on a daily basis for over one month now… There is a tea I’m drinking every morning before starting on coffee and breakfast…
It is called Lemon Myrtle. All I do is I take 2-3 leaves from the lemon myrtle trees that are growing outside the AirBNB I’m at, and pop them into a pot of boiling water…Let them sit for about 5 minutes and drink a glass or two. The native Aboriginal people of Australia have been using this exact plant leaf for thousands of years for anti-inflammation purposes among other reasons. So, after learning about that I figured why not give it a try.
You may not have this type of tree anywhere nearby, but if you search on Amazon there are quite a few different lemon myrtle options. Below is an iHaveUC Amazon affiliate link to lemon myrtle tea on Amazon as well:
Here is a Pub Med Study about Lemon Myrtle which is quite interesting/exciting:
The final part of the abstract from the study states:
Enzyme-linked immunosorbent assay and reverse-transcriptase polymerase chain reaction (RT-PCR) revealed that pretreatment with LME suppressed the protein expression and mRNA levels of pro-inflammatory cytokines such as interleukin IL-6, and tumor necrosis factor (TNF)-α in a concentration-dependent manner, respectively. These results suggest that LME could be used as a potential therapeutic agent having potent anti-inflammatory effects that could be used to treat inflammatory bowel disease.
Take care and wishing you all the best,
So I like UC’ers. That’s been going on since 2009 I’d say.
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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